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2.11.2010

Scott’s Seizure Part 2

Aaron sat in the chair next to Scott’s bed trying to comfort him and get to sleep. He laid Scott down and then put his head down in his hands and prayed. “I prayed him to sleep” he said. I put my head down so he couldn’t see me and wouldn’t be distracted to get up, and I prayed. While I was gone they were able to get an EEG done and Scott was able to sleep a bit more. When I returned around 1:30 though, Scott had a fever again. My heart dropped a bit and I dreaded the possible road that lay before us. I was afraid of this yo-yo cycle of fevers and seizures, but was happy to hear that he hadn’t had any while I was gone.

The plan was to let the morning dose of Dilantin wear off and see if Scott had another seizure. The doctor was actually happy that he got another fever while still in the hospital so they could better monitor him and see how he did. 3:00 was our magic time. If he was good by then we would possible get to take him home, or have him transferred out of the PICU and into a normal room. A normal room meant no monitors! We talked with the doctor’s about some of our concerns and their concerns. Here’s what we talked about:

Scott had complex febrile seizures, resulting from a high fever caused by infection.

He has an increased chance of having another seizure.

He may never have another seizure again (we are all hoping on this one)

His chance is increased for developing epilepsy.

They were wondering about his size (he is small?) We informed them that neither of us are big people and in our family he fits right in. He has a growth curve, it’s just small. The doctor turned to the other doctor’s and smiled kind of like, “I figured this”-I guess this was one of their possible theories, so no concerns about it.

Putting him on medication isn’t really a plan. Most medicines don’t help for febrile seizures anyways.

We need to be watching for him having more seizures-especially one not caused by a fever.

The blood tests from this morning all looked okay.

As we were waiting for 3:00 to roll around we put on a Disney movie, “The Earth” that has soothing music in it and I rocked Scott to sleep. He was able to rest for a little bit, and his temperature stabilized somewhat. At around 3:00 the nurse came in surprised and excited that they had gotten the results from the EEG and it looked good. She said that most times they have to wait until the next day or for a couple of days to get the results. We were happy that that may mean we were one step closer to getting to take our baby home. The EEG’s aren’t a perfect science, but at least for now there was no big abnormalities there. That was great news!

We were anxious to let Scott sleep in his own bed and hopefully rest his little body some more. He was still very wobbly today and was having a hard time sitting up and standing. It seemed to take every bit of energy to try to do that, and then he would want to lay back down. His poor little body was just so weak and tired. Aaron said when someone has a seizure it feels like they have just run a marathon. So 7 seizures….7 marathons? I just can’t imagine how sore is little body was. The hard part is that I think he would have rather just laid still so his body didn’t hurt as much being moved around, but his little 14 month old brain still had the be-on-the-go mentality.

A little after 3:30 the nurse came in and said that the doctor had given permission for us to take him home. We were so excited. Scott could finally get the rest his little body needed. She worked on the paperwork and Aaron immediately unhooked Scott’s monitors. Scott was asleep at the time, and as soon as he unhooked him, he rolled on his tummy, curled up his legs under him and went back to sleep. His typical little sleep position he had been longing for all day was finally his. While we waited for some nursing students to come in to take out his IV, we called the kids and let them know the good news. They were screaming and cheering-they were so excited to get to see him!

Taking out his IV was probably the most relieving part of the day. He hated that thing so much! He was having to get used to using one hand for everything, and though he was getting the hang of it, he hated that thing! He was very sleepy when they pulled it out, and didn’t really wake up much. After they took it out, Aaron picked him up and got to hold him, really hold him for the first time in two days. He held him close and just hugged him. It was a happy moment for us. When Scott woke up he tried to do something one handed, when he looked down and noticed that he wasn’t hooked up to something anymore. He kind of touched his bandage, and wiggled his hand around a bit until he finally figured out he was free! Freedom. Freedom from sickness and hopefully freedom from seizures. There was a whiteboard in his room that had his goals for the day written on it. No fever. No infection. No seizures. All good goals we know will be part of our life for the foreseeable future.

We dressed him in own little jammies, and talked with the nurse about our discharge plan.

Strong antibiotics for the next 7 days.

Continue Tylenol and Ibuprofen for the next few days as well to control fever.

Monitor fever frequently.

Follow up appointment in one week.

Explanation of emergency seizure medication Diastat. How to use it and when to use it.

If he has another seizure longer than 5 minutes use medicine and call 911.

Fill out forms to have medical records transferred.

We left the hospital well informed with what to do and hopeful that the days ahead would be good.

Brianna had a special New Beginnings program at church that night, and so Aaron decided to take her to that. With all the emergency lifestyle we had had the last couple of days I wanted my children to be able to cling onto something familiar for them. She was very excited about it and it was a good chance for her to have dad there and know that he was there for her too. A friend kept the other kids for us, so it was just Scott and I at home.

Though we were very glad to be home, I got a very quick first hand introduction to what the next few days would bring. Scott immediately got down on the floor and wanted to walk around. He would stand up and lean over like a drunkin’ sailor. I would catch him and try to hold him on my lap until he would struggle away and try it again. The screaming, crying, and utter frustration was more than his little weak body could handle. At 7:30 we both crashed on our bed and went to sleep. I was so tired, but would fall asleep and then wake up in a panic and touch Scott to make sure he was still breathing. It scared me because he was in such deep sleep at one point I moved him and he didn’t stir. I moved him harder and he finally moved. The constant panic, monitoring, hovering, and fear was beginning.